Off To A Shaky Start

As I mentioned in my previous post, I had not really recovered since the last round, even though we had four weeks between infusions. I kept feeling weak, tired, and not at all like I could go for walks or small hikes like after my fourth round. Mentally and physically, I don't feel ready for this round. 

The infusion itself went without a hitch, although I started getting hot flashes during the infusion! That’s a first, as far as I can remember. If there's good news it's that our new oncolologist (see bottom paragraph) suggested that we reduce my dosage of Docetaxel by 20%. I would have very much appreciated that offer after the nightmare of the first round but our previous oncologist would only "negotiate" with weeks between infusions, not dosage. Even for my supposed last round, though, I'll take the reduction! New oncologist said that it should make no difference in efficacy, especially at this point in my treatments. 

So yes, the hot flashes started atypically early. They continued through the afternoon and evening. I had at least a dozen of them in that time, I swear. 

My wife and I have a now-typical evening routine we enjoy that involves having our dinner while we settle in to watch a movie or some of the British mysteries we love. Date nights, if you will, almost every night! She has her glass or two of wine and I've learned that about an hour before we start is a good time to have a gummy. They take an hour or two to kick in. Then I have another near the middle-to-end of our show and I get NICE and relaxed for going to bed later. (I won't deny that enjoying our movie or shows with a little buzz is nice, too.)

The first sign of trouble, last night, was that my first gummy never seemed to kick in. I took a second, more potent one a couple hours later, and even then didn’t feel much from it. Just before bed, I took a third gummy (now a little over 75mg hemp-derived THC) with very little payoff. I definitely think my body’s reaction to THC is altered greatly by Docetaxel. This is far from the first time the chemo has prevented me from catching a good buzz and a good night's rest.

I went to bed shortly after 11pm. It was a cold night, so I tossed and turned for a while, not realizing that I wasn’t getting cozy enough to fall fully asleep. That went on until around 2:30am when I had to pee. I may have gotten an hour's sleep during that time? When I came back to bed, I spent some time replacing the light top blanket (that was more than enough the night before) with a much thicker blanket. I got back into bed, started getting warmed up, then felt a hot flash coming on. I rarely get them at night. I’m freezing when I get into bed and, within seconds of getting under warm blankets, I’m burning up. Finding some sort of equilibrium took some time and strategic blanket arranging.

 

After finally getting my temperature regulated, I curled up on my side to get some good sleep. HA! Restless leg syndrome kicks in, along with some other random nerve weirdness in my hips and toes. Foolishly, I was so desperate for sleep that I closed my eyes and hoped it would all “just go away”... It didn't. Somewhere after 4:30am, I took 15mg of dispensary THC in hopes that something would put me out for a few hours! This was not to be. No adjustment of blankets, pillow, body position, music, silence, or herbal supplements allowed me to get back to sleep. I got a lot of "rest" last night (hereby defined as me being horizontal with my eyes closed) but maybe two hours of actual sleep at most. 

 

I have a feeling it’s going to be a very “nappy” day for me. 

 

*People are always curious when I mention my "new oncologist". The regular oncologist at our Cancer Center retired at the end of last year. We never met him. Since his permanent replacement was not scheduled to start until September, we spent the first five months of our cancer battle (April through August) with a knowledgeable-but-temporary oncologist.

Accumulation

Just when you've got something like this figured out, the game changes. 

I have been weak and feeble since I came out of the worst of the side-effects this round. I just never got well enough to do any kind of actual exercise. My wife and I have talked about this and both think that this is a cumulative effect of the chemo in my system. My body is just having a much harder time bringing me back to some sense of normal. 

 

If we’re right, I worry about what that implies for my next (and supposedly last) round of chemo. 

 

During this round, I feel that many days were 5-10% better than those respective days in previous rounds. If the next one runs a similar course, I’ll appreciate the slight reprieve in severity but I won’t appreciate the extra bouts of nausea nor an extension of the already long, slow climb back to normal.

 

We recently read something about people claiming they still didn’t feel recovered until 2-3 months after their last round of chemo! I sure hope that happens just a bit more quickly for me. I feel like I’d feel so much better if I could just get some exercise, yet I can’t exercise when the simplest of tasks or chores wipes me out. Sometimes walking to the bathroom and back wipes me out! That much fatigue is not the least bit conducive to getting exercise.

 

My sixth chemotherapy infusion is scheduled for tomorrow. I guess all we can do is hope for the best under the circumstances.

Jinx!

The superstitious part of me suspected that this might happen. After posting my last journal entry stating my gratefulness for not suffering much nausea during chemo, I had two days of very serious nausea culminating in a 3am vomit-fest a couple nights ago. I should have just kept my mouth shut (fingers shut?) and not said anything. 

Actually, we're suspicious that I may actually be suffering some cumulative effects of the chemo. I was warned about this before I started but then, probably because my first round was as bad as it was, I quickly forgot the warnings about poisons (callin' it as I feel it) accumulating in my system. 

There's the nausea, which can be pretty bad at times, but is a consistent low-level problem right now. I also continue to feel weak and tired, something I was able to work my way out of as recently as the end of the last round. I'm writing this on Day 20 of this round, and still feeling poorly enough that I'm still sticking pretty close to home and not doing much. On Day 20 of the last round, I had already been out and doing some low-level hiking. 

I'm seeing my reaction to the side-effects of chemo as a bell curve, with the absolute worst days usually peaking around Day 7, then slowly tapering off through about Day 14. I still wasn't 100% after Day 14, but I had enough energy to start doing things. This round, the curve before the peak is lower and the peak itself is lower (both good) but the taper-off that should be happening afterward looks more like a plateau. 

I don't go in for my next infusion until October 1, so I still have next week to feel better, but the pace with which it's happening now is not encouraging. My wife and I both definitely think I'm dragging due to the cumulative effects of this damn chemo. 

Perhaps it goes without saying, but this new "extension" of ill effects is depressing.

Reasons To Be Cheerful, Parts 11 & 12

There's something I've been very grateful for that I just realized I've never written about in detail here. One very common side-effect of chemotherapy is nausea. Before I even started my first infusion, they wanted to make sure I had anti-nausea, anti-vomiting medication at the ready. I was not looking forward to this reaction but I felt like it was probably inevitable.

One major reason I've had to be cheerful is that, and I'm super hesitant to say this out loud... I have rarely been nauseous during this entire ordeal. Even though most doctors and nurses agree that I've had an inordinately high number of negative reactions to my chemo, I have only had a few rare instances of nausea.

Closely related, at least in terms of my ability to eat, is that another common side-effect is a loss (or change) in one's sense of taste. It has happened to me, but seems to be isolated to one or two specific tastes, and usually doesn't last long. For example, occasionally, water tastes bad to me. Then it's back to tasting like water later in the day or the next day.

I continue to be eternally grateful that neither of these notorious side-effects have been much of a problem for me. Why? Because it means that I can still eat somewhat normally and food still appeals to me. That's as important for my sanity as it is for my health.

It's Always Something

Before I even started chemotherapy, an oncology nurse advised me to start journaling reactions and side-effects. She was suggesting a different kind of journal than this one. She meant more of a daily thing where I made quick notes of reactions and side-effects so that I can track them, hopefully with the benefit of knowing what's coming and for how long. 

For the most part, this has gone according to plan. It has been good (though admittedly sometimes depressing) to look at "my dailies" and get a pretty good feel for what to expect on certain days. However, it fails me when it comes to the finer details, and mainly because there are always a few new reactions that were either never previously documented or intensified with successive rounds of chemo. 

I'll use this particular (fifth) round as an example. From the day of the infusion (Day 1) through Day 7, things were going pretty much according to the general pattern that had developed. In fact, during those days, I commented to my wife about how it seemed like the side-effects from this round were 5-10% milder than the same days on most previous rounds. It gave me the feeling that I was coming out of the woods, albeit with a long, slow hike out. 

I had recorded that Day 7 of most previous rounds met me with a health "slump". I suddenly felt much worse on that day, and often worse (or so it felt) than any of the days that came before. When I got to Day 7 of this round and still felt that 5-10% better overall, I thought I had dodged a bullet. 

Then came Day 8.

Day 8 of my fifth round of chemo turned out to be the kind of fresh hell that had hit me on most of the previous Day 7s. Extreme weakness, lethargy, a list of torturous nerve issues, thrush, stomach issues, bowel issues, rash issues, even some neuropathy in my fingers for good measure. I haven’t been keeping track of tears in either journal but I had a major breakdown on this day. It just all feels so fucking relentless and torturous. 

The next day turned out to be about the same. Perhaps not quite as intense but still pretty miserable. I'm writing this on Day 10 and I'm finally starting to feel that 5-10% less miserable again. Hopefully, this will continue. I remember that, by Day 13 of the previous round, My wife and I were able to go out and visit some parks. I was still pretty weak and tired quickly, but I could do it. I couldn't even fathom doing something like that yesterday or the day before. It took all my effort just to get to the bathroom!

In general, it has been good to keep track of reactions and side-effects in my other, private daily journal. What just happened, though, is a good reminder that the rounds are not going to be exactly the same and that I can't depend on feeling better just because my daily journal indicated I was feeling better on the same day. 

And So We Begin Again

I have to start with this great quote I just heard from the always wonderful Billy Connolly: 

The world is full of horrible things that will eventually get you and everything you care about. Humour and laughter is a universal way to lift your head up and say, “Not today you fuckers”.

I'm trying, Billy. I'm trying. Thanks for the good reminder!

Well, here we go again. On Tuesday, September 3, I had my fifth chemotherapy infusion. As usually, everything went smoothly and I felt no differently throughout that day. Today, I woke up to the hiccups again. Hiccups?! For the past couple rounds, I have noticed that I become incredibly susceptible to hiccups for the day or two after infusion. It would be a more humorous side-effect if I didn't dislike hiccups so much! I probably had hiccups at least six different times today. 

Here's our hypothesis: Hiccups are uncontrolled spasms of the diaphragm. Those spasms are initiated by nerve signals, and many chemo drugs irritate the nervous system. This same hypothesis would probably also explain I keep having restless leg syndrome, or why I have days when I feel like my legs are not just weak but kind of freaking out on me, or that occasional sensation of "chills" in my legs and butt at times when I am definitely not chilly.

Otherwise, though, Day 2 or Round 5 was pretty normal. I could tell I was losing energy as the day went on. It's about 9:30 pm on Wednesday right now and I'm starting to feel ready for bed but not because I feel horrible. I'm just getting tired.

(As a lifelong night owl, my usual bedtime was usually somewhere between midnight and 2 am. Now, I'm usually in bed by 10, and certainly even earlier when the chemo is hitting hard.)

I keep another journal, separate from this one and not online, where I'm really just documenting the timing and severity of side-effects. If the past four rounds is any indication, I'm in for a somewhat bad day tomorrow followed by 5-7 more very bad days after that.  yay.  I'm going to try real hard to remember that quote from Billy Connolly during that time.

Reasons To Be Cheerful, Parts 7-10

I've been struggling to write the next journal entry during this round of chemo. I'm not exactly sure why, but I suspect that it might be because nothing out of the ordinary happened during this round. That's not to say it was easy; there was still the truly hellish week when the side-effects are at their worst, there was still the long slow climb out of that and back to something that felt more human. 

It's just that, with slight differences in severity and duration, this round was very much like the three that came before it. In fact, this round kind of felt like a textbook example of what I've now come to see as the average round of chemo for me. Every time I sat down to write a journal entry, it felt like I was going to be repeating myself. 

 

However, right around two weeks in, Day 13 to be exact, I felt well enough to spend an afternoon using some energy for something more than basic housebound functions for a change. In fact, I felt a strong need to test what's left of my stamina. The weather was great, so my wife and I made a plan to visit a number of the Rock County Parks (located in southern Wisconsin) that we had yet to visit. 

The visits would not be like they used to be, where we'd walk the trails in places like that for a couple miles. Sadly, between chemotherapy and testosterone lowering/blocking drugs, I doubt I could hike for more than 3/4 mile (total) at one time before feeling wiped out. Very different from how I felt last year at this time.

We visited three new-to-us parks up there. We briefly walked some of the trails at the first two, maybe even more than 3/4 mile in total! (I was able to rest between parks because my wife drove.) I was getting pretty tired by the time we left the second one. Luckily, the main attraction at the third park was a nice, quiet lake, so we found ourselves a bench and contemplated the universe for a while. 

It was almost indescribably nice to get back out into nature after a couple weeks of chemo hell spent mostly on the couch.

 

Later that week, our daughter visited us. Not only did she help us out with some larger-scale cleaning jobs around the house, but we had a lot of fun too! She's my bonfire buddy, so we did some creative campfire cooking one evening. A couple days later, the three of us visited one of our favorite Forest Preserves in this area, partially as an excuse for my daughter and I to do some creek walking. Such wonderful, memory-making times! 

I've said before that I wouldn't wish chemotherapy on anyone, and that's still true. Describing it as "hellish" is not just hyperbole. I just find that what inspired me to finally write another entry after 20 days are the good times I've managed to have with my family when I'm not at my worst. Gotta keep the positive in mind, especially when it's harder to see in the grand scheme of things.

 

For reference:  Reasons To Be Cheerful, Parts 1-6